New York Estate Planning & Elder Law Blog
A recent survey of family home caregivers revealed that many of these individuals are strained and stressed out by their duties the demands of their loved ones with developmental disabilities and deeply concerned about the future. The survey analyzed the feelings of over 3,000 individuals caring for family members at home with developmental disabilities and found that 95 percent said they were stressed out with nearly half describing themselves as very or extremely stressed.
The questionnaire was conducted by Family & Individual Needs for Disability Supports (FINDS) Community Report and released by The Arc and The University of Minnesota’s Institute on Community Integration. The data collected is based on responses from 3,398 unpaid caregivers across the country who responded to an online survey conducted between January and April 2017.
Researchers conducted the FINDS primarily through an on-line survey administered between January to April of 2017 and made available in English and Spanish paper versions. Those invited to take part in the survey included caregivers who were family members or friends providing support to people with intellectual or developmental disabilities.
The survey further found that family and friends of those with intellectual or developmental disabilities spent an average of 57-hours per week support these individuals with everything from feeding and dressing to behavioral support and managing financial matters. The respondents said their obligations affected their ability to address their own personal needs, take care of their own family duties, and maintain their career.
The overwhelming majority, 80-percent, of those polled identified themselves as a family member of the person they were caring for and more than half of those individuals reported they had no plan for what would happen to the person they support in the event that they are no longer able to provide care. Overall, about 25-percent of those surveyed said their family member with intellectual or developmental disabilities were on waiting lists for government-funded services and reported difficulties finding help from direct support professionals or through respite care.
The personal impact on caregivers included reduction in work hours, declining promotions, or having to leave their professions altogether in order to provide the necessary care to loved ones or friends with intellectual or developmental disabilities. The survey shows the shortcomings of how society supports caregivers of people with disabilities and improve the quality of life for those living with intellectual and developmental disabilities.